As #ECRD2026 approaches, join Session 2 of the Preparing Reimbursement Decisions track to explore how the EU HTA Regulation can better support people living with rare and ultra-rare diseases. 🔗 Register online: https://go.eurordis.org/ECRDprogramme

That’s a wrap on the 2026 EURORDIS Open Academy x ERDERA Schools’ in-person training week! 👏 Congratulations to all participants on completing their trainings, we look forward to welcoming you to our active alumni community!

⏳ Less than 1 week until #ECRD2026! Session 1 of the Preparing Reimbursement Decisions track will explore the first 18 months of HTAR implementation, including JCAs, JSCs & orphan products. Join us online: https://go.eurordis.org/ECRDprogramme

Debates, role-plays, and practicing protocols. Day 3 of the EURORDIS Open Academy X @erdera.bsky.social Schools has seen our participants putting their newfound knowledge to the test. 💭 We look forward to concluding both schools with a final session of joint presentations tomorrow morning!

Diagnosis is not the end of the rare disease journey. Mental health, holistic care and access to specialised expertise remain out of reach for too many across Europe. These urgent challenges will take centre stage at #ECRD2026 in Prague and online. 👉https://go.eurordis.org/beyondcare

From hospitals to genomic research centres, participants at the #EURORDISOpenAcademy x ERDERA Schools’ training week are experiencing rare disease #research and care in #action. 🏥 Stay tuned to follow their journey throughout the week!🚀 @erdera.bsky.social

Lift-off for the EURORDIS Open Academy x ERDERA Schools' in-person training week, the culmination of a six-month learning journey for our 70+ participants! 🚀 👀 Stay tuned to learn more about what our trainees will be getting up to throughout the week. @erdera.bsky.social

A huge thank you to our #ECRD2026 media partners! Your support helps bring key conversations on research, policy, diagnosis, care, and innovation in rare diseases to a wider audience. 🚨 In-person tickets are sold out. Online registrations remain open: https://go.eurordis.org/register-fb

How can health systems better measure access to specialised healthcare for people living with rare diseases? At #ECRD2026, Session 2 will explore indicators, patient experiences & policy tools to improve equitable access to care. 🔗 Register online now: https://go.eurordis.org/register-bsky

In a new article, Marta Campabadal reflects on the first #OpenAcademy x ERDERA Mentoring Programme pilot and the power of peer support in the rare disease community. 📌 Read more and become a mentor: https://go.eurordis.org/blogstaff

💉On this #ClinicalTrialsDay, Rita Francisco, our Patient Engagement Manager, explores how the RealiseD project is reshaping rare disease clinical trials through innovative designs, patient engagement, and multi-stakeholder collaboration. 👉Read more: https://go.eurordis.org/yIi4Mw

👶 #Newbornscreening can detect rare diseases early, before symptoms appear. Yet access varies widely across Europe. EURORDIS calls for a harmonised approach, because every child deserves the best start. 🔗 https://go.eurordis.org/newbornscreening

How can we improve access to specialised healthcare for people living with rare diseases? At #ECRD2026, Session 1 of the “Strategies to Improve Access to Specialised Healthcare” track will explore equitable cross-border care & the role of ERNs. 💻 Join online: https://go.eurordis.org/register-bsky#ECRD2026

How can we strengthen evidence-based holistic care in rare diseases? At #ECRD2026, Session 2 of the Evidence-Based Holistic Care Track will explore the role of registries, SSH research & patient perspectives in improving integrated, patient-informed care. 👉 https://go.eurordis.org/register-bsky

In this testimony, Assam shares the story of his daughter Aiza’s MoCD diagnosis, revealing the isolation and uncertainty that rare conditions bring - while also celebrating resilience, love and the moments of joy that defined her life. 👉 Read here: https://go.eurordis.org/communityjourney

At the European Commission Disability Platform meeting in Cyprus, Charissa Frank called for disability assessment frameworks that reflect the realities of people living with rare, invisible, fluctuating & progressive disabilities. Read more 👉 https://go.eurordis.org/linkedinpost

How can holistic, patient-centred care improve quality of life for people living with a rare disease? At #ECRD2026, Session 1 of the Evidence-Based Holistic Care Track will explore care coordination, psychosocial support & evidence-based approaches to care. 👉https://go.eurordis.org/register-bsky

There’s still time to register for #ECRD2026 (3-4 June, Prague & Online). Three symposia hosted by top conference donors will explore diagnostic odysseys, innovation pathways & evidence for access in rare diseases. Register before 13 May to join on-site: https://go.eurordis.org/register-bsky

🩺 How can we improve access to medical devices for people living with rare diseases? This #ECRD2026 session will explore barriers and look at how ongoing regulatory developments can be translated into real-world impact 🔗 Discover more: https://go.eurordis.org/register-bsky

🧠 As #EuropeanMentalHealthWeek comes to a close, one message remains clear: mental wellbeing must stay a priority beyond this week. This summer, we will share new insights from our #RareBarometer survey on #mentalhealth in the rare disease community. 👉 https://go.eurordis.org/eurordisrarebarometer

For the 30M Europeans living with a rare disease, their vision of Europe is one with better access to diagnosis, care & support, no matter where they live. Learn more about how our European Blueprint will strengthen coordinated action to achieve this. #ECRD2026 🔗 https://go.eurordis.org/Blueprint

Researchers, clinicians, patient advocates - your experience could make the difference! 👋 Apply to mentor rare disease patient organisations in the 2nd edition of the Open Academy x ERDERA Mentor Programme. 📅 Dec 2026–May 2027 | 🔗 : https://go.eurordis.org/mentorcall

🔬 How is the future of rare disease therapies evolving in Europe? At #ECRD2026, this session explores innovation, clinical trials & upcoming EU reforms shaping the next generation of treatments, and access for patients. 🔗 https://go.eurordis.org/register-bsky

🎧 For #EuropeanMentalHealthWeek, we’re highlighting a 10 Minutes With episode on mental health and rare diseases. Exploring isolation, uncertainty & the need for integrated support, it shows why mental wellbeing is essential to care. 🔗 Listen: https://go.eurordis.org/10MWytb

Today is #IndependentLivingDay! For people with rare diseases, independent living is still a challenge: 53% struggle to access support. Independent living must be supported by accessible, flexible and person-centred systems. 🔗 Learn more: https://go.eurordis.org/rarebarometerresults

🧠 This week is #EuropeanMentalHealthWeek For people living with rare diseases, mental health is often overlooked despite its major impact. 🔗 Learn more about the challenges facing our community: https://go.eurordis.org/eurordisnewsroom

🔬 Bridging the gap from diagnosis to treatment is key in rare disease care. This #ECRD2026 session will explore challenges and solutions, from genomics to AI - aiming for faster, more equitable access to treatment across Europe. 🔗 Learn more: https://go.eurordis.org/register-bsky

Europe has the tools to lead on rare diseases, but lacks alignment. Fragmented efforts still limit access for 30M people across Europe. A coordinated EU Action Plan could change that. 🔗 Read the full article written by Valentina Bottarelli: https://go.eurordis.org/Europeandrarediseases

What happens when there is no diagnosis❓For millions, this is reality. ⏳ 5 years on average to diagnose a rare disease 🔍 44% consult 4+ healthcare professionals On #UndiagnosedDay, we stand with those still searching for answers. 🔗 https://go.eurordis.org/earlydiagnosis

We are pleased to announce Jean Saslawsky as the next #CEO of EURORDIS, starting 1 June 2026. With experience at CARE France, Fondation La France s’engage & Médecins du Monde, he brings strong leadership in partnerships and access to care for vulnerable communities.

The session on Early Detection & Newborn Screening will explore how to improve feasibility, cost-effectiveness and equity across Europe, supporting earlier diagnosis and better outcomes. 📅 3 June | Prague & Online 🔗 https://go.eurordis.org/register-x

📢 Applications open for the Repurposing Bootcamp for Patient Representatives! Organised by EURORDIS within @remedi4all.bsky.social, this in-person training (2–3 Nov 2026, Paris) will build skills in #drugrepurposing to improve access to #treatments for rare diseases. Learn more 👇

🎙️ Missed our latest #10MinutesWith? Now on YouTube 👇 Rhiannon Walls speaks with Allison Watson on advocating for ultra-rare conditions like Ring Chromosome 20 - from diagnostic challenges to the power of patient communities in influencing policy. ▶️ Watch now: https://go.eurordis.org/10MWepisode

Young advocates (12–21) are gathering in #Paris this week for the ERDERA Training at Institut Imagine#Paris Learning, sharing, and shaping the future of rare disease #research 🎥 Hear what they wish others understood about rare diseases in the video below!

🎓 #ECRD2026 is CPD accredited! Offering 12.75 hours of CPD, ECRD brings together professionals across healthcare, #research & #policy to explore the latest developments in rare diseases. 🔗 Join the conversation now: https://go.eurordis.org/register-bsky

Today is #EuropeanPatientsRightsDay ✊ For people living with rare diseases, patients’ rights mean timely diagnosis, equitable access to care, and a real voice in decisions that affect their lives. Making this a reality requires coordinated #EU action:https://go.eurordis.org/eurordisblueprint

💊 For many #raredisease patients,the challenge isn’t only the lack of treatments - it’s the long and complex journey to access one, with misaligned systems & small patient populations among factors slowing progress. 🔗 Read more: https://go.eurordis.org/rarediseasestreatments

⏳ Reminder: European Parliament Event on #RareDiseases Join policymakers, patients, & experts to shape a future EU framework that reflects real needs. 👉 Have you registered yet? Do it by 20 April: 💻 Can’t attend in person? Join online: https://go.eurordis.org/onlineregistration

#ECRD is committed to accessibility & inclusion! All sessions will feature live captioning + AI translation in 60+ languages. 📱 In Prague: scan a QR code to follow in your language 💻 Online: access captions directly on screen 🔗 Learn more & register: https://go.eurordis.org/register-bsky

Will #AI live up to its promises for #rarediseases? In his latest article, François Houÿez explores both the potential of AI to transform diagnosis & research - and the challenges around data, trust & patient involvement. 🔗 Read more: https://go.eurordis.org/newpublication

How can #Europe build a stronger, patient-centred #raredisease framework? On 23 April, EURORDIS & MEP Nicolás González Casares bring together policymakers, patients & experts at the European Parliament. 👉 Register by 20 April: https://go.eurordis.org/parliamentevent

Have an idea or challenge you’d like to discuss at #ECRD2026 in Prague? Submit your topic for an opportunity to lead a small group discussion and be part of the programme. ⏳ Deadline: 17 April, 18:00 CET 📩 https://go.eurordis.org/groupECRD2026

📢 New from IRDiRC: a publication by its Telehealth Task Force explores how #telehealth can improve diagnosis, care & research for rare diseases. Based on global expert insights, it highlights both opportunities & remaining challenges. 📄https://go.eurordis.org/rarejournals

#RareDiseases & #RareCancers are not separate worlds - patients face similar challenges, from diagnosis to access to care. Through the Rare Cancer Advocates Network, EURORDIS is working to improve outcomes and ensure no patient is left behind. 👉 Read more: https://go.eurordis.org/rarecancers

Planning your participation at #ECRD2026? Explore key tracks covering therapies, diagnosis, evidence, healthcare, reimbursement and mental health - all shaping the future of rare disease policy. 👉 Be part of the change: https://go.eurordis.org/register-bsky

⏳Our next episode of #10MinutesWith is coming up on 9 April! Join host Rhiannon Walls for a powerful conversation with Allison Watson on advocating for people living with ultra-rare conditions. Register on LinkedIn now to get notifications when we go live! 👉 https://go.eurordis.org/Og9TN1

For many people with #RareDiseases, care coordination isn’t provided - it’s expected. 📊 65% navigate multiple services 67% say providers communicate poorly 7 in 10 spend significant time organising care Integrated care is essential. 👉 Read more: https://go.eurordis.org/integratedcare

Step forward and lead the conversation at #ECRD2026! Participants can now submit topics for interactive group discussions in Prague. 📅 3 June 📩 Submit by 17 April: https://go.eurordis.org/groupECRD2026

🚀 Do you want to help shape patient-centred ATMP clinical trials? Join4ATMP is launching a new webinar series on patient involvement in trial design. Join the discussions now! 📅 14 April 2026 - 17:00–19:00 CET 👉 https://go.eurordis.org/Jointhewebinar

At #DIAEurope2026, EURORDIS highlighted a clear message: Europe’s innovation must be built with patients as partners - from data governance to fostering a culture of collaboration and using tools like regulatory sandboxes. 👉 Learn more: https://go.eurordis.org/eurordisareas